Friday, September 14, 2012

More than words...

 He can't say much, not with words, but he says a lot without words.  His face is constantly moving into different expressions, sometimes so quickly, it's easy to miss.  He has very strong opinions and he wants to be heard.  He wants to have a say in everything we do, because he likes feeling heard.  I know, because he tells me.  If he's trying to tell me something and I finally figure out what he wants, he claps for let me know that I got tell me he's happy that I took the time to understand.  He's happy to be heard.

Sometimes he asks me to repeat something...over and over.  He seems to hear, but has a hard time processing what he hears.  He gets a puzzled look on his face.  It's more apparent when he can't understand a word he already knows.

Where's T?
I started teaching him sign, but he has some motor apraxia (when there's a problem between wanting to move a certain way and actually being able to execute it, even though able to do it physically).  I tried moving his hands for him, but he refuses.  It embarrasses him that he can't follow my movements. He has a sensitive nature and is hard on himself. 

He finally learned how to sign "more".  It still tickles him that he can use this sign to ask for more swing, more swing, and more swing!  Sometimes, he signs for more funny faces, hugs, and kisses.

More swing!

But the happiness of communicating with sign didn't overcome, the frustration of learning it.'s on the back burner until he's motor planning (ability to execute a desired motor action) improves.

Now I'm exploring the use of an iPad as an augmentative device.  I bought the app, "My first AAC".  I'll let you know how I like it.
Put down the camera, mom!
Some may wonder why I seem to be in a hurry to find a communication avenue, but I'm following my own advice about treating according to your child's temperament.  My son is very interested in communicating his wants and needs.  He is also very frustrated by not being able to use words.  Especially because he already knows so many of them. 

There is a large discrepancy between what he knows and what he's able to convey.  He knows all the upper case letters, some of the lower case letters, the basic shapes, numbers 0-22, he can independently maneuver to his apps on the iPad, the basic colors, how to open doors using auto keys and handicapped buttons, and...and...probably things I don't know about yet.

Creating a future, one block at a time.

I'm constantly surprised by his abilities and knowledge.  It makes me happy and indescribably sad.  Happy that he is so motivated to learn, but sad that this large dead area in his brain is making it hard for him.  That large dead area that will continue to get in the way...every time his brain requests for something that is now dead.  After many attempts to communicate with this dead area or try to get through this dead area, the brain finally realizes it must build new roads and create new ways of making up for what is lost. 

There is a constant fear...the brain will get super efficient and only build roads deemed absolutely necessary for survival.  Survival doesn't really include talking, jumping, coordinated sports, or many other desired things.  You see...the brain is a super efficient little knows how to survive. 

The face of joy.
My goal is to convince Baba's brain that talking, jumping, reading, drawing, socializing, and living a full essential to survival.  I want him to be able to do more than physically survive.  I want him to be happy...whatever that means to his little heart. 

It's every parents dream to ensure happiness for their children, but brain injury certainly make this goal more complicated.  Did you know that there's a 50/50 chance that a child who suffers a stroke will grow up without any symptoms?  Well we're in the half that has to work harder.

Sometimes that's so hard.  Sometimes it seems too hard.  Sometimes I wonder if I can do it.  Therapy for years to come.  How does anyone survive it?

Then in a quiet moment of contentment, my son cradles my face with his tiny hands, looks deeply into my eyes, and gently kisses me.  It's more than words could ever say.

More than words


  1. I have no doubt that your son will thrive and learn. He sounds absolutely brilliant, and while I understand that he has some serious obstacles, the brain is a majestic thing, a mysterious organ that no one, no one understands completely. Keep at it!

    1. As always your words melt my heart. Thank you very much.

  2. Wonderful post. Your love for your son shines through your pain. I second Elizabeth's sentiments.

    I hope all is well with you and your family,

    Michele (cpdailyliving)

    1. Thank you! I really appreciate you warm comment!

  3. Bea....Thanks so much for coming by my blog...I'm so glad you did because I plan on spending more time here getting to know you and your sweet boy. I'm in love with him already and the picture of him in the NICU with the tubes made me cry. Lots of luck to you all in your journey! Enjoy this time with goes so fast!

    1. Thanks for stopping by, Katie. Yeah, the tubes in a baby thing is awful...not something anyone should experience.

      I am really trying to enjoy my time right now. He's such a gift!


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